Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance |
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Authors: | Elise Davis Caroline Nicolas Elizabeth Waters Kay Cook Lisa Gibbs Angela Gosch Ulrike Ravens-Sieberer |
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Institution: | (1) School of Health and Social Development, Faculty of Health, Medicine, Nursing and Behavioural Sciences, Deakin University, 221 Burwood Hwy, Burwood, Victoria, 3125, Australia;(2) Munich University of Applied Sciences, Munich, Germany;(3) Robert-Koch Institute, Berlin, Germany |
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Abstract: | Background Although parent-proxy reports of health-related quality of life (HRQOL) are only moderately correlated with child reported
HRQOL, it remains unknown why these scores differ. The aim of this study was to use a qualitative methodology to examine why
parents and children report different levels of HRQOL.
Method The sample consisted of 15 parent–child pairs. A think-aloud technique was used where parents and children were given a generic
HRQOL instrument (KIDSCREEN) and instructed to share their thoughts with the interviewer. Qualitative analyses were conducted
to assess whether parents and children base their answer on different experiences or reasoning, have different response styles,
or interpret the items differently.
Results There was discordance between parents and children, in terms of rating scale and in terms of the reasoning for their answer.
Children tended to have different response styles to parents, where for example, children tended to provide extreme scores
(highest or lowest score) and base their response on one single example, more than parents. Parents and children interpreted
the meaning of the items very similarly.
Discussion This study provides evidence to suggest that discordance among parent-child pairs on KIDSCREEN scores may be as a result of
different reasoning and different response styles, rather than interpretation of items. These findings have important implications
when parent-proxy reported HRQOL is used to guide clinical/treatment decisions. |
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Keywords: | Child self-reports Health-related quality of life Parent-proxy reports |
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